myWBDR application (the “Application”) and myWBDR Web Application (the “WebApp”)
Privacy Policy
myWBDR application has been developed by the World Federation of Hemophilia (WFH). WFH manages the myWBDR database, WebApp and app. For the WebApp and app, this is done in collaboration with Design2Code Inc. (referred as D2C). “We”, “us”, or “our” refers to WFH.
This document explains how your information and Personal Data (defined below) will be collected, used, stored and protected in accordance with the terms of this Privacy Policy and any applicable legislation. By using the Service, you consent to the terms and conditions as set out in this Policy.
Information we collect
When you use the Service, information we collect may include, but is not limited to:
- Your answers to the myWBDR application
- Date of completion of myWBDR application
While using the Service, we may ask you to provide us with certain personally identifiable information (“Personal Data”). Personal Data means any information about an identified individual or an individual whose identity may be inferred or determined from such information, other than business contact information (e.g. name, title, business address) and this may include, but is not limited to:
- Your email address
- A unique identifier of your record in the linked to the World Bleeding Disorders Registry (WBDR)
Under certain circumstances we may be required to disclose Personal Data without your consent. Such circumstances may include, without limitation and subject to applicable laws:
- Where use or disclosure of Personal Data is required by applicable law or by order or requirement of a court, administrative agency or governmental tribunal
- Where the Personal Data is public as permitted by applicable law
- Where the disclosure is to an affiliate, or a third-party service provider acting on our behalf
- Where the use or disclosure of Personal Data is reasonable for the purposes of investigating a breach of an agreement, or actual or suspected illegal activity
Who will access your information and Personal Data and how they will be used:
- WFH staff at the Research and Education Department for activities related to maintenance of the myWBDR database and to perform data manipulation, including de-identification, and analysis
- WFH will have access to de-identified and aggregate Personal Data and may use such data for research related to persons with bleeding disorders;
- Non-government entities (NGOs) working on bleeding disorders registries and related issues supporting WFH or government entities working on bleeding disorders related projects that can benefit from access to data will receive access that may include or be based on your Personal Data and in all appropriate situations, such as when reflecting summary statistics, only deidentified and aggregated data will be provided;
- WFH also may provide information, which may include or be based on your Personal Data (and such data will be deidentified or appropriately limited), to sponsors of, or entities that contract with, WFH, which, in both of the foregoing cases include companies, for the purpose of working on therapies or other products or services for use by or about persons with bleeding disorders;
- Independent investigators may request access to data which may include or be based on your Personal Data, for research purposes, and may be granted access after their request has been approved by the WFH investigator group and ethically cleared as applicable;
- We also will access the individual data for the following purposes:
- Detecting and addressing any technical or other issues with the Service;
- Updating, improving and maintaining the Service.
- D2C will not store any data and will not access any personal information
Your information could be used for clinical and other research purposes, but only for projects approved by a research ethics committee and any other authority required by the applicable laws. We anticipate that for most studies (e.g. those using data collected in the past, duly de-identified, aggregate and anonymous information) the research ethics committee might waive the need for your specific individual consent. In all appropriate cases where no identifying information is necessary, the information will be coded so that researchers using the data bank will not have access to any identifying information. Your email address will never be provided to third parties.
In all cases, the information will prevent direct identification of individual patients. Specifically, your e-mail address and user name will never be shared with any external entity and will only be used to enhance your participation to the myWBDR project through the WebApp and mobile app.
How we store and protect your data
Access to your Personal Data is limited, controlled, and managed to make sure that confidentiality is preserved. Maintaining your privacy and appropriate confidentiality is a top priority to us and strict security rules are in place to guarantee privacy is maintained at all times.
Your information is kept on the WBDR database which is physically located in a secure server at (BCB Medical, in Sweden), with appropriate physical, administrative and technical safeguards in place. These procedures protect your information from misuse, unauthorised access, interference, alteration, loss and/or disclosure.
We may retain your information and Personal Data to comply with laws, prevent fraud, resolve disputes, troubleshoot problems, assist with any investigations, enforce our Terms of Use and take other actions otherwise permitted by law.
Data transmission
Your information, including Personal Data, may be transmitted to – and maintained on – computers located outside of your state, province, country or other governmental jurisdiction, where the data protection laws may differ than those from your jurisdiction.
If you are located outside Canada and choose to use the Service, please note the data is sent to our servers in Sweden.
Your consent to this Privacy Policy followed by your submission of such information represents your agreement to that transfer.
Your rights to access and control your personal data
Very little Personal Data is collected through the Service. At any point in time, you may request complete erasure of your Personal Data. After deleting your information, some of your data may still be stored as part of previously generated aggregated statistics. At any time, and without providing a reason, you may request to obtain a copy, in an intelligible electronic format, of the data stored in your myWBDR record. Any request to obtain or delete your data should be directed to [email protected].
You understand and agree that you assume all responsibility and risk for your use of the Service, the internet generally, and the documents you post or access and for your conduct. Upon your request, we will take reasonable steps to correct, amend or delete your Personal Data that is found to be inaccurate, incomplete or processed in a manner non-compliant with this Privacy Policy except where the burden or expense of providing access would be disproportionate to the risks to your privacy, where the rights of persons other than you would be violated, or where doing so is otherwise inconsistent with applicable law.
What happens if you decline to use myWBDR App, to create a myWBDR account, or to login with the WBDR account?
If you choose not to create an account in the myWBDR App, you will not be able to use myWBDR app.
Changes to this privacy policy
This Privacy Policy is effective as of March 1, 2021 and will remain in effect except with respect to any changes in its provisions in the future, which will be in effect immediately after being posted on this page.
We reserve the right to update or change our Privacy Policy at any time and you should check this Privacy Policy periodically. WFH is committed to assessing, reviewing and updating this Privacy Policy on a case by case basis to meet any changes in regulatory requirements in applicable jurisdictions. Your continued use of the Service after we post any modifications to the Privacy Policy on this page will constitute your acknowledgment of the modifications and your consent to abide and be bound by the modified Privacy Policy.
Contact us
If you have any questions about this privacy policy, please contact us at: [email protected]
